The Ultimate Guide to Getting Social Security Disability for Lupus: 2022 Edition

Can I get Disability for Lupus?

Chapter 1: What is Systemic Lupus Erythematosus?

Systemic lupus erythematosus (SLE or “Lupus”) is a chronic, inflammatory autoimmune disease characterized by a very broad clinical presentation of various signs and symptoms. This is as a result of the disease affecting multiple organ systems. The disease can impact the individual’s skin, lungs, joints, heart, blood, kidney and brain.

Lupus is an autoimmune condition where the immune system attacks the patient’s own body tissues, leading to inflammation, irreversible damage, and in rare cases even death. If you have Lupus, you may  from time to time experience very intense and debilitating symptoms: a so-called Lupus “flare”.  These recurrent intense flareups can lead to disability, significantly impairing their ability to perform normal daily tasks or work.

Other times your Lupus symptoms can range from mild to severe.  It is not uncommon that between “flares” Lupus symptoms may be very limited and permit normal activities.

In some cases, the condition and its complications can be life-threatening.  Lupus currently has a much higher survival rate than in the past.   Thanks to advances in early diagnosis and treatment of systemic lupus erythematosus the average 10-year survival rate now exceeds 90%.

Lupus has four main types:

  • Systemic lupus erythematosus (SL)

This is the most common type characterized by impact on various organs and systems in the body. It also differs from other Lupus types in its demographic impact: females between the age of 15-45 (childbearing age) represent the majority of the cases.  Men can get this type of Lupus too, but it is quite uncommon.

  • Drug-induced lupus

This occurs after exposure to certain medications such as (Hydralazine, Tumor-necrosis factor (TNF) alpha inhibitors, Minocycline, Isoniazid, Quinidine), causing an autoimmune response. This can affect many organs, although symptoms often subside or disappear after the medication is discontinued.

  • Discoid lupus

Also known as chronic cutaneous lupus, this affects the skin on the face, scalp, arms or neck.  Discoid lupus could happen alone, or as part of SLE.  The majority of those who are initially diagnosed with discoid lupus will not develop SLE. On the other hand, many of those with SLE will have some form of discoid lesions.

  • Neonatal lupus

This rare form happens in newborns, potentially as a result of maternal antibodies. It can affect the skin, liver, blood and heart. The disease could cause serious organ damage or death, however, in most cases, it can resolve on its own within 4-6 months.

 

Chapter 2: What Causes it and Who Gets It?

Who Gets Systemic Lupus Erythematosus (SLE)?

Although anyone can get Lupus, there are certain groups and factors that increases the risk of developing SLE. This includes:

  • Being a woman: women are about ten times more risk of developing SLE than men. It happens most commonly in females in the childbearing age (15-45 years old).
  • Race/ethnicity: African Americans, Native Americans, Asians, and Hispanics have higher prevalence developing SLE than other ethnicities.
  • Family history: those with family members diagnosed with lupus or other autoimmune disorders, are at a higher risk of developing the disease.

What causes Lupus?

As all the other autoimmune disorders, the exact cause of SLE is unknown. This means that scientists could not determine a specific factor that caused the immune system to rebel and attack its own tissues. However, studies have suggested a few potential factors that can cause SLE.  These include:

  • Genetic: A number of gene variants have been linked to SLE presentation.  Lupus does appear to “run in families”.
  • Hormonal: Female sex hormones are strongly associated with this disease, as they can affect certain immune cells
  • Environmental factors such as:
    • Bacterial and viral infection.  For example, Epstein–Barr virus (EBV) is linked to the onset of SLE in children.
  • Exposure to excess sunlight or UV rays
  • Severe emotional stress
  • Other potential triggers including some hair chemicals, smoking and silica

Chapter 3: How is Lupus Diagnosed?

Making an accurate diagnosis of Lupus can be challenging. Many of the symptoms and diagnostic indicators of Lupus are also characteristic of other conditions.

The diagnosis will be based on the observation of the signs and symptoms of the disease, laboratory testing, and imaging testing that often tailored to each patient.  Rheumatologists are typically the appropriate medical speciality to diagnose Lupus.

Tests may include:

  • Antinuclear antibodies (ANAs) tests: this is the most important test as it measures the amount of the autoantibodies that targets the nuclear component of the cell. Considering that almost all SLE patients are ANA-positive, detecting ANAs in SLE patient is essential for your physician to make a diagnosis.

A positive ANA test can be diagnostic of other autoimmune disorders, such as rheumatoid arthritis, but typically the ANA  level for Lupus is higher than in other autoimmune disorders.  The diagnosis of Lupus can be difficult, and is best reserved to doctors specializing in rheumatology.

  • Other autoantibody tests, including anti-Smith and anti-dsDNA, are also highly diagnostic for lupus.
  • Laboratory tests including:
  • Complete blood picture
  • Liver function test
  • Serum creatinine
  • Urine analysis
  • ESR or CRP levels
  • Imaging studies including:
  • Kidney CT
  • Chest CT
  • Brain MRI
  • Joint radiography
  • Echocardiography (for the heart)
  • Certain procedures may be performed to exclude other conditions or evaluate how progressed the disease is. This may include:

 

Chapter 4: What Are the Signs and Symptoms of Lupus?

SLE is an inflammatory chronic disease that can impact many organ systems. The course of the disease and its symptoms could vary from one person to another, ranging from mild to severe and debilitating.  Some Lupus sufferers can maintain employment and a normal life, while others are unable to work and live a typical life.

Any of the following symptoms could affect someonewith SLE,:however, some of them are more common in certain age groups than others. If the onset of the disease was during childhood, the following symptoms may be more common:

If the onset of the disease was later during childbearing age (15 to 45 years old), some of the most common initial symptoms could be:

  • Fever
  • Joint pain
  • Rash
  • Raynaud syndrome (numbness and discoloration of fingers and toes when stressed or cold)
  • Dryness in the eyes

Individuals may also experience any of the following symptoms:

  • Fatigue
  • Weight changes
  • Muscle pain
  • Nausea
  • Sensitivity to sunlight or fluorescent light
  • Hair loss
  • Abdominal pain

 

Chapter 5: How is Lupus Treated?

Lupus is an autoimmune disease. This means it is typically not “cured”.  Treatments target the symptoms, and in many cases the condition can be managed.  Rheumatologists now have many treatment options and recommendations to help you deal with the condition and improve your quality of life.

The treatment approach of SLE will often vary based on the type and severity of the disease. Although, the following general recommendations would apply to all cases:

  • Stop smoking and strictly limit or avoid alcohol consumption.
  • Ensure you have taken all your immunization/vaccination shots to avoid recurrent infections.
  • Eat healthy, non-inflammatory diet
  • Try to exercise: Mild to moderate, low impact on joints exercise with sufficient resting periods

If your condition is mild or moderate in severity, your doctor may initially prescribe the following:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs): to reduce the pain and swelling. You could use over the counter ones such as ibuprofen, or prescription only NSAIDS such as diclofenac.
  • Antimalarial medications: Medications such as Hydroxychloroquine (Plaquenil), and chloroquine (Aralen), were initially used to treat malaria.  They have, however, been found effective in treating the symptoms of Lupus. Indeed, they now represent the standard of care for many Lupus cases, demonstrating efficacy in easing symptoms such as  fever, joint pain, rashes and fatigue.  Antimalarial medications also reduce general inflammation, and in some patients, may even slow or prevent the disease from progressing to other organs.

If the condition is progressing and the symptoms are getting worse, your doctor may prescribe the following:

Corticosteroids: these are strong anti-inflammatory medications that will help reduce the pain and swelling, while calming your immune system. They could be prescribed in various forms based on the symptoms, such as topical creams, tablets or injections. Corticosteroids can have serious side effects. Therefore, doctors typically only prescribe cortisosteroids for Lupus for an interval or a short period of time, not as a continuous long-term treatment.

Biologics: meaning medications derived from some biological origin, such as belimumab (Benlysta). It reduces the symptoms of lupus by blocking some aspects of the immune system that takes part in attacking your own organs/tissues.

Immunosuppressive agents: these are only given in severe cases, with multiple organ involvement, to suppress your immune system. These drugs slow your immune systems response and its attack on your body. Of course unfortunately, this means that your immune system’s ability to fight infection is weakened. . Examples of immunosuppressive drugs include: methotrexate (Trexall), and azathioprine (Imuran).

Chapter 6: What Are the Complications and Comorbidities of Lupus?

When the disease progresses, severe inflammation throughout the body can damage tissues and multiple organs.

If the central nervous system is impacted, cognitive, behavioral and emotional issues may occur. This includes:

  • Difficulty remembering regular things including normal day chores or work duties
  • Difficulty concentrating while reading information or working
  • Difficulty expressing yourself or what you are thinking of
  • Agitation
  • Depression
  • Anxiety
  • Seizures
  • Vision issues
  • Stroke
  • In some cases, it may even lead to psychosis or hallucination

If the lungs are affected, you may experience the following:

  • Shortness of breath
  • Painful breathing
  • Coughing
  • Increased risk of pneumonia

Unfortunately, approximately 50% of lupus patients develop nephritis (inflammation of the kidneys).   Nephritis reduces kidney functions, which can progress to a life-threatening end-stage renal disease/kidney failure

Symptoms of kidney disease may include:

  • Edema in the legs, face, or hands
  • Blood in urine
  • Foamy urine
  • Dry itchy skin
  • Muscle cramps

If the heart is impacted, it can lead to pericarditis or myocarditis (inflammation of the heart tissues). Symptoms include:

  • Cough
  • Racing or pounding heartbeat
  • Chest pain
  • Shortness of breath
  • Swelling of legs
  • Swelling in the abdomen

Lupus can also affect the blood and vascular system causing the following:

  • Low number of red blood cells (anemia), low white blood cells or platelets counts
  • Blood clots
  • Bleeding
  • Hardening of the arteries
  • Inflammation of the blood vessels

Lupus can increase the person’s risk of all infections, and the risk of developing a thyroid disease.  Additionally, pregnant women with lupus are more likely to suffer complications with high blood pressure, premature birth or miscarriage.

Chapter 7: Is Lupus a Disability?

The answer is definitely yes! Systemic lupus erythematous affects around 1.5 million people in the US. The disease can be highly debilitating due to the involvement of numerous organs and systems, and the progression of the disease. Consequently, the person’s ability to perform normal daily activities or work duties. will be negatively impacted.

Medical evidence suggests that highly physical and cognitive jobs are specifically challenging to patients with SLE.  High absence rates and the inability to stay “on task” are higher for Lupus patients when compared to those without the disease. High disease activity, in addition to the fatigue and pain experienced by the patients, prevent them from continuing work.

Physical limitations and cognitive issues such as memory loss and inability to concentrate at work, will reduce work efficiency and cause problems in maintaining or finding employment.

This often can lead to loss of income and worsening of the person’s financial situation. Studies have reported that 15–40% of patients lose their jobs after 5 years of the disease, and this percentage increases to 36% and 52% after 10 and 15 years respectively.

The constant fatigue and pain are the main two symptoms affecting the quality of life of patients. Around 50 to 90% of patients with SLE experience constant fatigue. The intensity and duration of Lupus fatigue may not correlate with how long someone has suffered from the disease, or how far the Lupus has progressed.. In a high quality review of 19 medical studies, fatigue led to impairment in work productivity and increase in absence, leading to employment loss.

Equally important to a disability claim is the fact that almost 95% of SLE patients struggle with arthritis/joint pain.  These limitations are reported to significantly reduce their ability to perform work duties, handle household responsibilities, and exercise even to a minimal extent.   In more rare cases Lupus can limit the individual’s basic daily living activities such as personal hygiene.

These physical struggles, in addition to impairment of the central nervous systems and other systems in the body, will in many cases, lead to emotional or psychological distress and disorders.  More than 2/3 of patients with SLE suffer from one or more forms of emotional disorders. One study reported that 85% of SLE patients had depression, while 61% suffered from anxiety.   This study also found that the severity of the depression and anxiety significantly correlated with the degree of disability they experience.

Receiving adequate treatment that provides clinical improvement does not always mean that your quality of life and ability to work have also improved significantly. Despite good response to therapy, the majority of SLE patients still have severe limitations and report low quality of life.  This is because of the tissue and organ damage that Lupus may have already caused.

If you suffer from lupus and have paid social security taxes through your employment, you have the right to apply for social security disability insurance benefits.  The monthly disability check from proving disability due to Lupus means you can support yourself and your family.  You have paid for this benefit through your employment taxes so you can  reduce the economic burden that you may endure as a result of your inability to work.

Chapter 8: Assessment of Lupus Disability under the 5-step Sequential Evaluation Process

At this initial step in the Sequential Evaluation Process the social security decision-maker asks a very simple question: are you working?  There is nothing unique about a Lupus based disability claim when work activity is being considered.  Social security first considers:  are you working?

At step 2 of the Sequential Evaluation Process, the social security disability decisionmaker asks a simple question: Is the condition “severe”?  Sounds like a simple question – of course, Lupus is VERY “severe”, right?  The term “severe”, however, for social security disability purposes has very specific legal meaning.

The same social security rules and regulations apply to every state in the nation.  Yet there can be different interpretations in the different federal appeals court circuits – another reason you might want to hire a local disability lawyer and not a national disability lawyer or firm).

In the Fifth Circuit Court of Appeals – that includes the state of Texas – there is a specific interpretation of what “severe” really means.  A condition is not severe only if  it has “such minimal effect on that individual that it would not be expected to interfere with the individual’s ability to work.” Stone v. Heckler, 752 F.2d 1099, 1101 (5th Cir. 1985).

So exactly what does this “mumbo-jumbo” mean when considering a Lupus social security disability case in Texas under step 2 of the Sequential Evaluation Process?  Its means that the social security disability decisionmaker almost never finds that the claimant’s Lupus is “non-severe”.  Very few Lupus disability cases are decided at Step 2.

At step 3,  the decision maker considers whether your Lupus “meets” the conditions set out in the disability regultion found in “14.02 Systemic lupus erythematosus”.

There is widespread misinformation about Lupus and meeting the listing, and I have seen many social security disability attorney we sites that seem to add to that confusion.  This is because few make it clear that meeting the Lupus listing is not the only way to secure disability benefits for Lupus; rather, it represents medical consensus on what a  case of Lupus looks like that is so severe there is no doubt it is disabling.  Many online resources talk of the “Blue Book”  – a simple collection of the Listings – and give the impression that failing to meet a Listing for Lupus is the end of the matter.  In fact, meeting a Listing for Lupus represents a minority of favorable disability decisions for Lupus.   With that background, let’s look at what it takes to meeting the listing for Lupus.  There are 2 seperate paths to meeting the Lupus listing.  Both require the following: At least two of the constitutional symptoms or signs:

  • severe fatigue
  • fever
  • malaise
  • involuntary weight loss

In addition to this “foundation” finding of “constitutional symptoms or signs”, meeting the Lupus listing requires either of the following:

PATH 1PATH 2
Repeated symptoms of lupus,
AND one of the following at the "marked level":
One of the organs/body systems involved to at least a moderate level of severity
* Limitation of activities of daily living.
* Limitation in maintaining social functioning.
* Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.

If you can do any of the work you have done in the past 15 years despite your Lupus symptoms you will not qualify for social security disability benefits.  The social security administration decision-maker in Texas cannot award you disability benefits if he or she finds you could return to any of the jobs that you held in the last 15 years.  Seems like a clear enough question, but lay persons can often be confused at Step 4 about what exactly is meant by ability to return to Past Relevant Work. Over now a quarter of a century handling only social security disability cases in Dallas Fort Worth I have heard claimants give these kinds of answers to that question:

They would not take me back at that job now..” “That job requires a lot more training now” “That job had changed and it is too technical for me now” “My old job doesn’t exist any more. All those jobs have gone to Mexico”

These answers reflect a misunderstanding of what social security means by “ability to return to work”.  The social security regulations are not interested in whether any of your prior jobs are actually available to you now.   Rather,  it means could you now perform the job you had many years ago if it was offered to you.

The question of whether you could go back to “past relevant work” is a  hypothetical question. A hypothetical question is based upon assumptions rather than actual facts.  The social security decision maker is simply wanting to know whether “hypothetically? could you meet the job demand of any job you performed in the past 15 years.

I could part of this inquiry is securing your opinion of whether you could return to any past relevant work.   In nearly every one of the hundreds of administrative law judge hearing I have held the client is asked a “what-if” question like this:

“If you were offered that same job (a job the claimant did in the last 15 years) could you do it?”

the question is about your Lupus and its symptoms.   It is about your ability to perform the functions of the job.  It is not about ehe availability of the job. The judge asks this question wanting to know whether you believe you could physically perform the job.  It is not that the judge is trying to trick you into saying you could return to past work. In fact, answering “yes” to the “what-if” question about ability to return to work is not the kiss of death for a disability case.  Most administrative law judges understand that claimant’s have pride and a solid work ethic, and may evn be willing to try and go back to work.  But they will want to know more and ask follow up questions to try and tease out whether the  claimant really thinks they can return to work, or whether they are ashamed to admit they can’t work any more.

Asking you about your opinion on their ability to return to past work is important because youare the only person who truly understands what you are going through, and what your Lupus keeps your from doing.

The social security  decision-maker must determine what residual functional capacity (“RFC”)  category the claimant falls in.    RFC is simply what vital job-related abilities remain despite the Lupus symptoms.  RFC is usually expressed in terms of these categories:  “Heavy”, “Medium”, “Light” and “Sedentary”.  This RFC found by the decision-maker must be consistent with a past relevant work job in order to support a decision that the claimant can return to past relevant work.  Here is an example:

Lets say your joint and muscle pain from Lupus is so severe that you could do only a sit down job (a “sedentary” job).  But your pain won’t let you stand and walk for most of a normal workday.  This ability to be on your feet most of the time at work is characteristic of what id called “light” work.  If all your past work was “light” or more demanding in exertional requirements the ALJ could not find you capable of return to past work.

The issue of whether you could do other work at the sedentary level would then be the crucial issue.  In this area, your age is particularly important.  Generally it is harder for the government to find your could do “other work” when you are older than 50 years of age.  See my comprehensive post about this important topic.

This is the last, and usually most important step in securing social security disability benefits based on Lupus. You proved at Step 4 that you are unable to go back to prior work, but to secure social security disability you must prove you cannot do any work in the national economy.   At step 5 of the Sequential Evaluation Process the social security decision-maker must answer the question: could you do any other work despite your Lupus symptoms? Here at step 5 your age, education and the type of past work becomes important.  In general, it is harder to get disability at a young age.  Over the age of 50 the social security administration rules concedes that it is harder to transfer job skills to a new occpuation, or learn a new skill.  So sometimes, “winning” at Step 4 – that is, a finding of inability to return to past relevant work – will seal the deal for a Lupus sufferer over the age of 50 where past work was performed at least at a “light” level and the claimant has no skills that would transfer to a “sedentary” job.   This is because the so-called “Grid” rules direct a specific finding of “disabled” or “not disabled” based upon age and vocational factors.  Here is an example:

Under 50 Over 50
Past Relevant Work: Light Past Relevant Work: Light
Residual Functional Capacity: Sedentary Residual Functional Capacity: Sedentary
No skills transferrable to Sedentary No skills transferrable to Sedentary
NOT DISABLED under Grid Rule 201.18 DISABLED under Grid Rule 201.10

Attorney Stanley Denman has won hundreds of Lupus social security disability cases in Dallas Fort Worth over the past 25 years of exclusive disability representation. He is a frequent speaker at North Texas Lupus support groups, as well as the “Rally for Lupus” sponsored by the LONE STAR CHAPTER of the Lupus Foundation of America.

Chapter 9: Winning Disability Benefits for Lupus: 5 Key Points

Lupus-based disability claims share the same key features of a winning disability case with other types of claims.   But several of these key points for winning may be even more important in a lupus-based disability claim.  Here are 5 keys to winning disability benefits for Lupus:

Key Points #1:  Don’t “exaggerate” your pain

Famed psychiatrist and Nazi prison camp survivor Viktor Frankl made the following observation about pain and suffering:

“A man’s suffering is similar to the behavior of a gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”

This reality can easily lead disability applicants to appear to an ALJ to be exaggerating their pain.  Your Lupus pain may indeed have “filled the room”, but it is important to put your pain in perspective.  The disability applicant who claims her Lupus pain is a “10” on a scale of 1 to 10 may find the ALJ skeptical about their truthfulness.  Try your best to put your pain in perspective.  You do not need to experience excruciating pain all day, every day, to qualify for Lupus-based disability benefits.

Key Point #2: Diagnosis and Treatment by a Rheumatologist

The social security administration likes medical specialists.  They are more inclined to believe the opinion of a specialist in the area concerned than that of a general doctors.  Rheumatologists are the “”gold standard” when it comes to Lupus diagnosis and treatment.

Key Point #3:  Follow Your Rheumatologists Advice

The field of rheumatology has made great advances in the treatment of Lupus.  High quality treatment by a rheumatologist can often ameliorate the more debilitating symptoms of Lupus.  If you are not under regular medical care from a rheumatologist, and if you do not follow your rheumatologist’s medical treatment plan, you will have difficulty winning social security disability benefits.

Key Point #4: Make Sure your Rheumatologist’s medical records reflect your disabling symptoms

It is not uncommon for Lupus sufferers to fail to fully inform their health care provider about the debilitating symptoms they are suffering.  Make sure your medical records don’t say you “are doing fine” when in fact you are not.  Tell your rheumatologist what you are suffering with.

Key Point #5: don’t try and educate social security about the medical condition of Lupus

Lupus tends to strike younger people.  Lupus disability is typically totally unexpected.  Because your Lupus disability is such a surprising development in your life you may feel compelled to educate social security about why you are unable to work at such a young age. Such efforts are usually counterproductive.  The social security administration is familiar with Lupus and does not need a primer on the condition.

More importantly: submission of voluminous materials about Lupus you acquired on the internet – while well-meaning – may create the wrong impression with the ALJ.

Chapter 10: Further Reading: Lupus Research and Resources

About Co-Author (medical information)

Dr. Dina Elsalamony is an experienced physician with a bachelor’s degree in medicine and surgery and a master’s degree in public health.
She has over ten years of experience practicing medicine and working across different medical roles

Education:

  • Ain Shams University – Bachelor of Medicine, Bachelor of Surgery – MBBS

  • University of Sunderland – Master of Science (MS), Public Health

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